Ask-the-Expert: A Community Portrait through Surveys and Insurance Claims Data

Presented on June 17th.

Do you have questions for DM experts? Join Sarah Howe, MBA, of the Marigold Foundation for an “Ask-the-Expert” discussion, A Community Portrait through Surveys and Insurance Claims Data! 

The patient voice is critical to understanding myotonic dystrophy (DM). As experts in their own right, those living with DM can inform research, drug development, and government decision-making. Join Sarah Howe, MBA, Program Manager of the Marigold Foundation, as she presents findings from the Christopher Project and a DM insurance claims data analysis project. These studies shed new light on the burden of disease and illustrate the importance of patient-centered research in the development of scientific, clinical, and policy solutions to help improve the lives of individuals and families living with DM.

Speakers to include:

Sarah Howe, MBA has worked in myotonic dystrophy for 15 years as the Program Manager for the Marigold Foundation. Marigold is a private Canadian foundation focused on therapeutic development, research, and strategic initiatives in myotonic dystrophy. Most recently, Sarah was Project Coordinator for the Christopher Project, a large survey of patients, families, and caregivers living with DM1 and DM2 aimed at understanding their unmet needs and elevating the patient voice in myotonic dystrophy. Click here to read the open access publication.

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